Imagine finding out your
parent has a deadly disease—and
then not just one but several classmates find out their parents
are suffering from the same disease. That’s what happened
at Miami’s Killian High School. In all, five families
with children attending the school in 1988 would have a parent
diagnosed with ALS. During Thanksgiving of his senior
year, Kevin Packman learned his father, Bruce, had been diagnosed
with Amyotrophic Lateral Sclerosis (ALS). An avid baseball
fan, Packman knew ALS was the disease that struck Lou Gehrig. “We
didn’t know anything about the disease,” Kevin
recalls. “At the time, there was no Internet, no resources
in South Florida, and no one knew much about ALS. We were lost,
confused, and angry.” ALS is a rapidly progressive,
invariably fatal neurological disease that attacks the nerve
cells or neurons responsible for muscle control. Over time,
the upper and lower motor neurons degenerate or die and, unable
to function, muscles gradually weaken, and patients lose their
ability to move their body. The cause of the disease, discovered
in 1869, remains a mystery, but strides to identify its origin
and develop a treatment are being made. Inspired by
his father’s fight against ALS, Packman wanted to make
sure no family suffered from a lack of information, so he began
a public awareness campaign. While in college in Texas, he
was instrumental in getting then-Governor Ann Richards to declare
April 1991 as Lou Gehrig’s Disease Awareness Month, and
later in Washington, D.C., he helped draft legislation that
ultimately became part of the Congressional Record in 1992
declaring May as National ALS Awareness Month. At the
same time, his parents were determined to make ALS a household
word, so Bruce and Cila Packman founded the ALS Recovery Foundation
to raise money to find a cure for ALS. But it would be some
time before the foundation would become active.

All too soon though, history would repeat
itself, and Kevin heard from his high school friend Adam
Silverman. His mother
had ALS. “Early on we relied on the Packman family for
information and support. Had it not been for Kevin and Bruce,
I would have had no idea what ALS was,” remembers Silverman. “At
first we thought it was a strange coincidence we attended
the same high school because ALS was perceived as a rare
disease.
Now we know as many as 30,000 people in this country suffer
from the disease at any one time.”

And then the unthinkable happened again.
This time Killian High graduates Michael and Meredith Singer
got in touch with
Kevin—and their father, Robert J. Singer, M.D., had ALS.

Were these ALS cases just a coincidence, or was there something
more to it?

“We do believe there are environmental factors at work with ALS,” says
Walter G. Bradley D.M., F.R.C.P., professor and chairman emeritus of the Department
of Neurology at the Miller School of Medicine. “There are repeated
reports of areas that appear to have a higher incidence of ALS than should
be the norm.”

The first major report came from Guam.
Between 1940 and 1965, ALS among the Chamorros—Guam’s
indigenous inhabitants—reached 50 to 100 times the rate in developed
countries and became their leading cause of death.

Scientists believe the high rate was due to a toxic amino
acid called BMAA, produced by cyanobacteria and found in the
roots of the cycad, an ancient
group of seed
plants. The neurotoxic cycad seeds were often used in food and traditional
medicines and consumed by fruit bats, which were once considered a delicacy
on the island
and eaten in large quantities. As the Chamorro population became more
Americanized after World War II, the use of cycad seeds dwindled,
and the rate of ALS
decreased.

Then there is the troubling case of the Italian soccer players.
A large study of 7,325 Italians who played professional soccer
between 1970 and
2001 found
that 15 developed ALS, which is about a six times the number that would
be expected in that group of people.

“The research showed that Italian soccer players who
had played for more than five years were 13 times more likely
to develop ALS than the control group,” says
Bradley. “I suspect that the fact that they play on natural
grass with exposure to BMAA may be linked to their illness, but we
haven’t proved
it yet.”

Another link that hasn’t been proven yet is among U.S. veterans serving
overseas. Prior studies found an increased risk of ALS in Gulf War veterans,
but Bradley recently served on an Institute of Medicine panel that looked into
the problem. And the panel’s report showed that the link
may not just be the Gulf Wars, because the risk for ALS was also
apparent for veterans of World
War II as well as the wars in Korea and Vietnam.

Adding to the complexity of the ALS puzzle, researchers have
discovered that the disease may also be inherited. The first
gene linked to
ALS is copper-zinc
superoxide dismutase, commonly known as SOD1. Known mutations
in SOD1 account for about 2 percent of all ALS cases.

“In light of all these factors, it is important to
try and identify what the environmental exposures may be and
whether genetic susceptibility plays a role,” says
Bradley. “We’re looking at brains on autopsy, as
ALS patients have BMAA in increased concentration. We are also
looking at hair because that is
something you can study in living patients.”

As the quest for more medical knowledge moved forward, so
did Kevin and his mother, Cila, actively raising funds for
the
ALS Recovery
Foundation. With
the assistance
of many community members, including Barbara Tifford, who
was most helpful
in sharing her knowledge and time, the foundation held its
first event in May 2001,
a 10K run and 5K run/walk, which raised approximately $125,000.

At the same time, another South Florida
family, the Perezes, established the UM/ALS Research Foundation
to raise money.
Perez patriarch
and ALS patient Jose Perez established the foundation and
his sons, Jose
and
Alberto, have
carried
on the ALS fight in their father’s name. The money they raised went to
support Bradley’s research team.

Two years ago the ALS Recovery Foundation and the UM/ALS
Research Foundation joined together to form the ALS Recovery
Fund (www.alsrecovery.org),
a grassroots organization reliant solely on volunteers. Together
they
recently
pledged
$1 million to endow a chair in ALS in honor of Bradley, who
recently retired from
the Miller School.

“The merger of these two organizations made sense since
we had one common goal,” says
Kevin Packman, who is now president of the organization.

“Our goal in joining forces was to have the University
of Miami at the forefront of ALS research and patient care,” says
Jose G. Perez, a board member. “That
was my father’s goal. As a son, I feel I still owe
him a couple of things; one was ensuring my brother and I
made my father’s goal of an endowed chair
a reality. We’re now seeing the fruition of what we’ve
accomplished. Through this chair, we’re going to be
able to keep our father’s legacy
alive for generations.”

“We wanted to avoid a vacuum for ALS research and patient care in South
Florida,” adds
Packman. “We collectively felt that there had been
too much accomplished with ALS to let it slip away when
Dr. Bradley retired. This gift will enable
the medical school to recruit a prominent physician-scientist
and guarantee that ALS patients in the southeastern United
States and Americas will continue to
receive the best care possible.”

Under Bradley’s direction, the ALS
and Neuromuscular Programs at the University have grown into
one of the largest ALS clinical and research programs in
the
country.

“The commitment of the ALS Recovery Fund of $200,000
per year for five years makes my dream of an endowed chair
in ALS at the Miller School a reality,” says
Bradley. “Over 16 years as director of the ALS and
Neuromuscular Programs at UM, we’ve grown into one
of the largest ALS clinical and research programs in the
country, and the ALS Recovery Fund has already given over
a million dollars
to support those programs. And this new commitment shows
the strength and support in the South Florida community
for finding the cause and cure of this dreadful
disease.”

“With the ALS Recovery Fund, our common thread is that we have all been
touched by ALS,” says Donna Singer, the organization’s executive
vice president and widow of Robert Singer. “That terrible and demoralizing
disease brought all of us together as a family.”

Another ALS patient, Mark Kessenich Jr.,
and his family brought the ALS program at the Miller School
more than
$4 million.
With this
help, Bradley
has run
the Kessenich Family MDA ALS Center since it opened in
March 1998. It was there that
Donna Singer and Jose Perez first met when she attended
an ALS support group with her late husband. The center
assists
patients
and families
by making
sources of care available to patients regardless of their
ability to pay. The ALS Recovery
Fund, and previously the ALS Recovery Foundation, has
provided annual grants of up to $10,000 to ALS patients in need
of such resources.
Mark Kessenich’s
sons, Mark and Paul, and Barbara Robertson, continue
to support the Kessenich Family MDA ALS Center, and with
this new commitment from the ALS Recovery Fund,
will be working to enhance services for ALS patients
at the Miller School.

“The endowed chair is only our first step. Our organization
is committed to a long-term partnership with the University
to provide all the resources it needs
to continue its cutting-edge research and treatment for
ALS patients,” adds
Adam Silverman, who is also a board member.

In the meantime, the research moves forward. Recently
University scientists discovered that hyperbaric oxygen
treatment
may benefit some ALS

patients and studies are ongoing. Researchers continue
to focus intently on BMAA, investigating whether the
toxic amino
acid
is an underlying
cause of
the neurodegenerative
disease. This research may be the most important breakthrough
in the last few decades in the understanding of this
fatal disease.

“If we’re right about the BMAA connection,” says
Bradley, “we
may be able to begin treating ALS within the next couple
of years, and that’s
what we’re really hoping for.”

ll too soon, though, history would repeat
itself, and Kevin heard from his high school friend Adam
Silverman.
His mother
had ALS. “Early on we relied on
the Packman family for information and support. Had it not been for Kevin and
Bruce, I would have had no idea what ALS was,” remembers Silverman. “At
first we thought it was a strange coincidence we attended
the same high school because ALS was perceived as a rare
disease. Now we know as many as 30,000 people
in this country suffer from the disease at any one time.”

And then the unthinkable happened again.
This time Killian High graduates Michael and Meredith Singer
got in touch
with Kevin—and their father, Robert J.
Singer, M.D., had ALS.

Were these ALS cases just a coincidence—or
was there something more to it?

“We do believe there are environmental factors at work
with ALS,” says Walter
G. Bradley, D.M., F.R.C.P., professor and chairman emeritus
of the Department of Neurology at the Miller School of Medicine. “There
are repeated reports of areas that seem to have a higher incidence
of ALS.”

The first major report came from Guam.
Between 1940 and 1965, ALS among the Chamorros—Guam’s
indigenous inhabitants—reached 50 to 100 times
the rate in developed countries and became their leading
cause of death.

Scientists believe the high rate was due to a toxic amino
acid called BMAA, produced by cyanobacteria and found
in the roots
of the cycad,
an ancient
group of seed
plants. The neurotoxic cycad seeds were often used in
food and traditional medicines and consumed by fruit
bats, which
were
once considered
a delicacy on the island
and eaten in large quantities. As the Chamorro population
became more Americanized after World War II, the use
of cycad seeds
dwindled and
the rate of ALS
decreased.

Then there is the case of the Italian soccer players.
A study of 7,325 Italians who played professional soccer
between
1970 and
2001 found
that 15 developed
ALS, which is about six times the number that would be
expected in that group.

“Italian soccer players who had played for more than
five years were 13 times more likely to develop ALS than the
control group,” says Bradley. “I
suspect that the fact that they play on natural grass
with exposure to BMAA may be linked to their illness, but we
haven’t proved it yet.”

Another link that hasn’t been proven
yet is among U.S. veterans serving overseas. Prior studies
found an increased risk of ALS in Gulf War veterans,
but Bradley recently served on an Institute of Medicine
panel that found the risk for ALS was also apparent for veterans
of World War II as well as the wars
in Korea and Vietnam.

Adding to the complexity of the ALS puzzle, researchers
have discovered that the disease may also be inherited.
The first
gene linked to
ALS is copper-zinc
superoxide dismutase, commonly known as SOD1. Known mutations
in SOD1 account for about 2 percent of all ALS cases.

“In light of all these factors, it is important to
try and identify what the environmental exposures may be and
whether genetic susceptibility plays a role,” says
Bradley. “We’re looking at brains at autopsies,
as ALS patients have BMAA in increased concentrations.
We are also looking at hair because that is
something you can study in living patients.”

As the quest for more medical knowledge moved forward,
so did Kevin and his mother, Cila, actively raising funds
for
the
ALS Recovery
Foundation. With
the assistance
of many community members, including Barbara Tifford,
who was most helpful
in sharing her knowledge and time, the foundation held
its first event in May 2001,
a 10K run and 5K run/walk, which raised approximately
$125,000.

At the same time, another South Florida
family, the Perezes, established the UM/ALS Research Foundation
to raise money.
Perez patriarch
and ALS patient Jose Perez established the foundation,
and his sons,
Jose and
Alberto, have
carried
on the ALS fight in their father’s name. The money they raised went to
support Bradley’s research team.

Two years ago the ALS Recovery Foundation and the UM/ALS
Research Foundation joined together to form the ALS Recovery
Fund (www.alsrecovery.org),
a grassroots volunteer organization. Together they recently
pledged $1 million
to endow
a chair in ALS in honor of Bradley, who recently retired
from the Miller
School.

“The merger of these two organizations made sense since
we had one common goal,” says
Kevin Packman, who is now president of the organization.

“Our goal in joining forces was to have the University
of Miami at the forefront of ALS research and patient care,” says
Jose G. Perez, a board member. “That
was my father’s goal. As a son, I feel I still
owe him a couple of things; one was ensuring my brother
and I made my father’s goal of an endowed chair
a reality. We’re now seeing the fruition of what
we’ve accomplished.
Through this chair, we’re going to keep our father’s
legacy alive for generations.”

“
We collectively felt that there had been too much accomplished with ALS to let
it slip away when Dr. Bradley retired,” says Packman. “This
gift will enable the Miller School to recruit a prominent
physician-scientist and
guarantee that ALS patients in the southeastern United
States and the Americas will continue to receive the
best care possible.”

“The commitment of the ALS Recovery Fund of $200,000
per year for five years makes my dream of an endowed chair
in ALS at the Miller School a reality,” says
Bradley. “Over 16 years as director of the ALS
and Neuromuscular programs at UM, we’ve grown into
one of the largest ALS clinical and research programs
in the country, and the ALS Recovery Fund has already
given over a million dollars to support those programs.
And this new commitment shows the strength and support
in the South Florida community for finding the cause
and cure of this dreadful
disease.”

“With the ALS Recovery Fund, our common thread is that
we have all been touched by ALS,” says Donna Singer,
the organization’s executive vice president
and widow of Robert Singer. “That terrible and
demoralizing disease brought us together.”

Another ALS patient, Mark Kessenich Jr.,
and his family brought the ALS program at the Miller School
more than
$4 million.
With this
help, Bradley
has run
the Kessenich Family MDA ALS Center since it opened in
March 1998. It was there that
Donna Singer and Jose Perez first met when she attended
an ALS support group with her late husband. The center
assists
patients
and families
by making
sources of care available to patients regardless of their
ability to pay. The ALS Recovery
Fund and previously the ALS Recovery Foundation have
provided annual grants of up to $10,000 to ALS patients
in need
of such resources.
Mark Kessenich’s
sons, Mark and Paul, and Barbara Robertson continue to
support the Kessenich Family MDA ALS Center, and with
this new commitment from the ALS Recovery Fund,
will be working to enhance services for ALS patients
at the Miller School.

“The endowed chair is only our first step. Our organization
is committed to a long-term partnership with the University
to provide all the resources it needs
to continue its cutting-edge research and treatment for
ALS patients,” adds
Adam Silverman, who is also a board member.

In the meantime, the research moves forward. Recently,
University scientists discovered that hyperbaric oxygen
treatment may
benefit some ALS patients.
Researchers continue to focus intently on BMAA, investigating
whether the toxic amino acid
is an underlying cause of the neurodegenerative disease.
This research may be the most important breakthrough
in the last
few decades
in the understanding of this fatal disease.

“If we’re right about the BMAA connection,” says
Bradley, “we
may be able to begin treating ALS within the next couple
of years, and that’s
what we’re really hoping for.”